A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

1. A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE

2. The European Patients’ Forum FEPI CONFERENCE PLACING THE PATIENT FIRST 26 September 2007 Patient -centred health care in Europe

3. My presentation • Background to EPF • Patient-centred Healthcare in Europe • Moving Forward Together : Empowerment, Information and Sustainability • Future partnership opportunities between FEPI and EPF

4. Image of Patients A major move from passive recipients, or sanctimonious bystanders, ……to Informed and politicised actors

5. Why we exist • High quality, patient centred, equitable health care in Europe • Provide a strong patients’ voice in European healthcare debates • Umbrella organisation of currently 27 representative European patients’ organisations and growing.

6. 5 strategic goals • EQUAL ACCESS FOR PATIENTS • PATIENT INVOLVEMENT • PATIENTS’PERSPECTIVE • SUSTAINABLE PATIENT ORGANISATIONS • PATIENT SOLIDARITY

7. A virtuous circle of influence

8. Patient Involvement at EU level • Health related projects and programmes • Health agencies and think tanks • Cooperation with health NGOs and other patient organisations • Cooperation with industry

9. Patient Involvement in Practice at EU level • Pharmaceutical Forum • Transparency Initiative • Stakeholder Involvement (Health Democracy) • Patient Safety • Patient Mobility

10. Responsibilities of Patients Organisations • To be democratic, inclusive and independent • To defend the rights of their patient constituency • To be professional and transparent • To build consensus and Solidarity

11. EPF SPRING CONFERENCE • MOVING FORWARD TOGETHER • Empowerment, Information, Sustainability • Important action for EPF to take forward at EU level in partnership with other stakeholders.

12. EMPOWERMENT Active support for the involvement and meaningful participation of patients • EU Health Policy Strategy • Mainstreaming policy and programme work • VALUE + Project on how to involve patient researchers and patient organisations in EU projects • Patient Involvement - core eligibility criterion

13. INFORMATION • Active support for EPF’s continued strategic and valued input, from a patient’s perspective on • The draft report on information to patients presented from the European Commission to the European Parliament and the European Council in April 2007.  The High Level Pharmaceutical Forum’s work on information to patients

14. Information to Patients THE FUNDAMENTAL RIGHT TO KNOW ‘EPF believes that ALL patients, no matter their condition, background or nationality, have a fundamental and legitimate human right of access to information about their health, medical conditions and the availability of treatments including knowledge of the best available management of their disease. It is a question of solidarity, equity and patients’ rights’

15. Commission Report • Commission’s Report was circulated for consultation in April - Deadline 30 June • Very good overview regarding the current state of play - nothing on the way forward • EPF will be active in presenting the patients’ perspective on this Communication & its follow-up.

16. EPF’s position • Better access to high-quality, reliable, and balanced information about diseases, prevention methods, healthcare services, and treatment options, including medicines. • NO to DTCA • EPF position paper and reference documents

17. EPF’s position • QUALITY INFORMATION SHOULD COME FROM MULTIPLE SOURCES. • PHARMACEUTICAL COMPANY -a legitimate source of non promotional information on their products • FOR PATIENTS ACTIVELY SEEKING OUT further information on their conditions and available medicines

18. Governance issues • How will the information be regulated ? • Three options • an ex ante validation mechanism wherby national authorities would assess and validate information to patients. • co-regulation which includes a review process which would be built on ex poste controls including sanctions • self regulation according to an agreed code of practice.

19. Pharmaceutical Forum • EPF IS THE PATIENTS’ REPRESENTATIVE • KEY STRAND - INFORMATION TO PATIENTS • RESPONSES TO THIS WORK VIEWS OF NOT ONLY OUR MEMBERS BUT PATIENT GROUP ALLIES

20. ITP Working Group • Member States and Stakeholders ( MEPs, Health Professionals, ‘Insurance funds’, industry and the patients) • Focus Quality Principles ITP Model on Diabetes Access to information in certain settings ( eg hospitals, pharmacies) Tool Box

21. Quality Principles • EPF Response - Quality principles - important backdrop to current and future EU level developments - Need for a context and intro - QP should be model information - clarity of language - more patient oriented

22. Diabetes Model • EPF Response -Missed opportunity to apply quality principles -Not patient centred, holistic, inclusive - EPF list of contents for a comprehensive information model Poor quality example but illustrated the value of a model

23. INTERNET • An important source of information yet only 50% of EU citizens have access to internet and many sites are in english only. • A quality label for approved sites • Cannot be perceived a sole info source for patients but rather in concert with other info resources

24. SUSTAINABILITY • Commitment to, and active support for, EPF’s drive towards • a patient-centred approach throughout the patient’s entire journey as demonstrated by future joint projects and initiatives • patient organizations being able to access a wide and secure EU funding base, including adequate and ongoing core institutional funding to fulfill their role in participatory democracy.

25. Opportunities for cooperation • EPF Internal Mailing to patient group allies • Cooperation on key campaigns affecting all patients and health stakeholders • Participation at respective meetings EPF Spring Conference 2008 • Contribution to projects ( e.g the tuning project

26. More information? • www.eu-patient.eu • Info@eu-patient.eu

27. A STRONG PATIENTS’ VOICE TO DRIVE BETTER HEALTH IN EUROPE